To Swim Is to Endure: On Living with Chronic Pain

Most days, this is what I need—a splash. Even on a cold day like today when I want to go home and get under the covers, I’m compelled to strip down, put on the thin skin of a swimsuit, and jump in.

The water is cold, so I have to keep moving. This is what water does for me. It clears my head. Banishes my worries to half sentences. I don’t feel so sad. If I was angry when I got to the pool, I work it out as I crash down the lane, arms punching the surface of the water. I hit it and it does not hit back. The water absorbs me.

There was a time that I swam for fun, but now my body demands it. If I don’t swim, the pain grows. If I’m in more pain, what will become of my life?

*

The headache came on suddenly. I woke up with it one day in August 2013. On the eighth day, I saw a nurse practitioner.

I’ve had the headache now for three years, six months, and counting. I wake up with it and go to sleep with it. The headache lives in my forehead, pulsating continuously, from one temple to the other. On good days, if I concentrate on something else, I might almost forget about it. On bad days, light and sound irritate me, and the constant awareness of the pain fatigues me. On terrible days, I stay in bed.

I don’t have a history of headaches; no one in my family does. I’ve tried so many things: this kind of drug, that kind of drug, drug infusions administered through IVs, chiropractic care, acupuncture, cranial sacral massage, medical marijuana, amber-colored liquid from a Chinese medicine doctor ferried to me by an aunt from Taiwan, gluten-free diet, caffeine-free diet, everything-free diet, meditation, electrical pulses that prickle against my forehead for twenty minutes a day, leaving my stressful job running an underappreciated arts education program with ever-decreasing funds. I have figured out what makes the headache worse: lack of sleep or interrupted sleep, onions, some types of tomatoes, bass-heavy sounds, the rush of consternation when I find myself in a fight with my partner. But I have found little that makes it better.

Somehow swimming helps, gives me some semblance of control over a body that will not behave. I swim four to five days a week, for at least thirty minutes at a time. When I emerge from the pool, my breath returning to me, the water dripping from my body, relief settles in. My body feels looser. For a few hours, after each swim, the pain in my head dials down a notch.

*

In the room I shared with my sister growing up, the leg brace hung on the doorknob of the closet door. It consisted of a white belt that circled the waist and metal rods that connected to the bottom of attached shoes. Mimicking bones, the rods had joints at the knees. The joints scratched against the white paint of the closet door, leaving gray marks. Sometimes I wrote faint words on the closet door with the joints.

As soon as I entered this world, my body did not behave. I was born with my feet turned inwards and started my life in orthopedic shoes. During the first few years of grade school, I wore the leg brace at home, including while I slept. Today, the American Academy of Pediatrics says this treatment hasn’t proven effective.

With my pigeon-toed feet and mediocre posture, my body and I have always had an uneasy relationship. I don’t generally think of myself as clumsy, but sometimes I find bruises or cuts on my body and I don’t remember how they got there. When I was fifteen, my shoulders—specifically my trapezii, located at each slope of the shoulders and down the upper back—began aching. My mother took me to a rheumatologist who was always accessorized with a colorful bowtie. He prescribed muscle relaxants, but they made me unbearably thirsty. He drew my blood, ran tests, and sent me to a physical therapist.

Eventually, Dr. Bowtie was stumped with me. He declared me a “conundrum.” He suggested that maybe I just had the shoulder muscles of a much larger person crammed into my petite frame, where they strained against their confines. My body, he said, was unexplainable.

I originally took up swimming to temper the shoulder aches, but discovered it had other benefits as well. Though I’m not much more graceful in water than I am on land, swimming gives me the illusion of grace; makes me feel fluid in my movements. In an alternate reality of weightlessness, the water takes me—a teeth-grinder, a lopsided walker, a smacker when I eat—and makes me elegant: All my limbs flutter, one side and then the other, a constellation of moving parts propelling me forward.

*

Henry David Thoreau famously wrote in his journal, “How vain it is to sit down to write when you have not stood up to live! Methinks that the moment my legs begin to move, my thoughts begin to flow . . .” Studies have shown that walking can boost creativity. If walking is a creative stimulant, for me swimming is a creative intoxicant. When I walk, even if I have no destination in particular, a part of my brain constantly scans my surroundings. In a pool, I go from one wall to another and back again. My mind stops scanning and can wander freely. I have done some of my best thinking in the pool: generating story ideas, writing haiku in my head, retrieving memories.

Sometimes I let a thought repeat until it becomes a kind of mantra. Once I was close to tears because I was on deadline for a newspaper feature story and I could not write. As I swam, I kept repeating to myself, “I can write this,” a stroke to each word. For over twenty laps, I told myself this, until the words became a rhythm in sync with my limbs, until the thoughts became as automatic as my movements. Afterwards, I went home and wrote the story.

Some days, I swim for an hour without stopping. That is the other thing about swimming: the endurance you build. Swimming has enabled me to walk the hills of San Francisco without getting out of breath. It has also helped me to get out of bed, to write the story, to approach a life of constant pain with calm acceptance and a drive to do better.

I’ve swum in YMCAs all over the country, from the antique basement pool open for just a few hours a day in Somerville, Massachusetts to the renovated Prospect Park location in Brooklyn gleaming in white-and-blue tile work. I’ve swum tiny figure eights in hotel pools. I swim wherever I am. In brutal Chicago winters, I trudge through the snow to the campus aquatics center. In downtown Houston, I take my lunch break at the indoor pool a few blocks away. When traveling, I always look ahead of time to find the nearest pool. I’ve swum the Kitsilano Pool in Vancouver, the largest outdoor saltwater pool in North America. At the time, it didn’t have lanes; swimmers circled, and I marveled: This is what it must feel like to swim like fish in a school.

*

I remember that the room had no windows. The judge sat behind a raised wooden desk with a phone. The only thing I can remember about him now is that he was a white man. I sat before him at a small table, my handwritten notes in front of me. I had carefully chosen my outfit that day, one that I hoped would signal responsibility. I remember exactly what I wore: a lace top, a black pencil skirt with a floral digital print, and a cream blazer.

I had decided to leave my job, a job I cared about deeply, because it compounded my stress and made my headache worse. I lived off state disability for a while as I pondered what to do next. One day, the state denied further payments, writing that “the normal expectancy of this medical condition is three days.” If only my headache had lasted a mere three days.

To appeal, I had to appear before the judge. And so, in the windowless room, the judge questioned me and I made my case. My partner was the only other person in the room. Still, I shook with the nervousness of having to speak in a legal proceeding, and with the indignity of having to prove my medical condition.

For the first two years of my headache, I hoped that medicine would find its cause; then I would solve it and return to my headache-free life. Neurologists, though, still don’t know why I woke up one day in throbbing pain that has yet to cease. The search for a medication that might help is a slow exercise in trial and error. It often takes six months to know if a drug has had any effect.

Sometimes I think of my headache as a star that is light-years away, pulsing in our earth’s night sky. We are seeing a star that might no longer exist because its light took so long to travel to us. Somewhere in the future, I think, is a headache-free me. But I’ve had to come to terms with the possibility that my headache may never leave. After applying for a few full-time jobs, I realized that I needed a flexible schedule to tend to it, one that would accommodate the hours out of my day I spend swimming. The headache has also forced me to bow out of social events; made me fearful about attending concerts. It has complicated the already complicated question about whether or not I should be a mother. And it has added another aspect to my identity, one that I am still reluctant to claim—that of a disabled person.

Does a never-ending headache make me disabled? Some days, I think the answer is yes. Yes, because the headache has become a central fact of my life. A constant source of pain. A thin layer of sadness, like the first dusting of a snowfall, blanketing every aspect of my life.

*

It’s Friday evening, and I’m at another YMCA. The pool is packed with the after-work crowd and a youth swim team. I’ve spent my day in front of a computer, researching and writing. I work from home these days, in the corner of a room with a gray rug, a gray couch, and two simple desks that almost match: one for my partner, one for me. I’m attempting the freelance hustle as a journalist, though it means financial uncertainty.

I survey the lanes and pick one where the other swimmers are about my speed. I jump in, completely in, so my entire body is underwater. Then I push off from the wall. Every part of my body engages: legs straight, feet pointed, stomach tight, shoulders-arms-head swiveling. Water parted by my arms moves back into place behind me. What my body does, it does on its own.

Sometimes, when I’m swimming, I think about the sisters who fled Syria in a dinghy meant for six people, but packed with twenty. When the motor failed twenty minutes into their journey and began sinking into the Aegean Sea, the sisters and two others who knew how to swim jumped out and swam for three and a half hours in open water, dragging the broken boat of refugees with them. They survived. At other times I think of my mother, who never learned to swim at all. Left behind by her parents and raised by her grandmother, she grew up feisty and independent in so many ways, deeply fearful in others. She has never let go of her fear of water.

As I swim, I turn my head above the water and inhale. Muffled sound envelops me. I exhale in the water, and bubbles cascade around me. I may never be completely free of the fear of living the rest of my life in pain, but every day or two, I release it again into the water.

Swimming soothes me in a lullaby of repetition. Swimming is uncomplicated. It does not need machinery; every day, it is just me and the water, a space entirely my own. Even if the pool is full of people, there I am by myself, breaking the surface again and again.

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